"Alfie's Army" and long term implications

[Andromeida59]

I think that there has been so much scaremongering around the hospital and expertise of the medical professionals that I genuinely feel that this will put some of from having their children treated because of the mass hysteria created around this case.

I have been gobsmacked by so much that I've seen around the Alfie Evans case. Personally, I don't think I've ever seen such rabid paranoia and conspiracy theories (lethal injections, Big Pharma, organs for cash etc.). I'm also trying to understand the mentality behind "Alfie's Army". I think what started off as well intentioned "thoughts and prayers" etc. has now escalated in to something that even the family will not be able to control. I also think it's only a matter of time before the "Army" turn on the father.

I do think that hospitals make mistakes and of course medical professionals will not always be right but there seems to have been an escalation in animosity since the Charlie Gard case. I think that next time a case of this type occurs, the outcome could be far worse because who would have imagined we would have seen protesters attempting to "storm" a children's hospital?

Also, really don't understand the "the child belongs to the parents ergo it's up to the parents to do what they want" attitude. I'm not a parent (and I don't think being a parent suddenly endows parents with a wealth of medical and legal knowledge) but surely people understand that children do not "belong" to them?

imo, once doctors have all agreed that a child is terminally ill, the legal position should change:

the onus should be much more on the hospital to prove significant risk of increased pain & discomfort for the child,
if they wish to prevent the parents moving their child for alternative treatment.

This is where UK law on parents' rights may need to move towards that of our European neighbours

Of course, it is very difficult to hold this debate when there are unruly mobs online and around hospitals, making disgraceful allegations & threats against medical staff.

All worsened by rightwing US politicians and "Christian" organisations leaping on any chance to demonise the NHS and "socialised" healthcare

• the Social Darwinist system that they want, with the NHS abolished - along with the welfare state - would make life worse for most of Alfie's Army, who would be less able than the despised mc professionals to go private.

In this case I don't think the hospital would have had difficulty proving a risk of significant harm given that just touching AE apparently caused seizures, let alone moving him to a different country.

The whole situation has been tragic for all those directly involved.

I thought the documented court reports were beautifully explained - as a layman, they made sense and were sensitive to the family's grief.
I agree, in my view the decision was correct but it still feels wrong if that makes sense!

This probably encapsulates my views - seems a balanced view.

pjsaunders.blogspot.co.uk/2018/04/alfie-evans-has-progressive-incurable.html

When someone has no quality of life and is terminally ill, the only significant risk that should be considered imo is whether the hospital can prove that patient would suffer significantly more pain - and would definitely be aware of this

Otherwise, dying a few days, even a few weeks or months earlier, should not be enough to over-ride the wishes of the parents, or other legal guardians in the case of adult patients.

Of course, if the UK didn't make these situations into such dramatic legal cases of poor parents vs the might of the establishment,
then there wouldn't be so many fanatical supporters, donations from an angry army or from US groups with an axe to grind
So the option of paying for treatment elsewhere might simply no longer be available in such cases.

However, as long as the state / NHS appears to demand full control of patients, even after doctors have agreed they can do nothing,
then with the resentment of the powerless, together with the shock felt in other countries,
the NHS will continue to haemorrhage funds & reputation.

However as long as the state/NHS appears to demand full control of patients, even after doctors have agreed they can do nothing...

I think a lot has to do with medical ethics which may well be country-specific. In some “life at all costs” countries an unresponsive, brain-dead life of ventilation may seem preferable to allowing these children to die. Certainly, this is what Alfie’s parents thought they wanted.

The US model is sort of moot as Alfie’s parents wouldn’t have been able to afford 18 months of PICU, let alone indefinite ventilation.

In the UK, where medical care isn’t dictated by pro-life, religious factors long-term ventilation of what is essentially a corpse is considered ethically wrong.

The NHS should absolutely NOT keep terminally ill, almost brain-dead patients artificially alive for years

However, it should not prevent parents or guardians removing them to non-NHS hospitals, including abroad,
providing they have the private funds to do so

• which in practice would not be the case once the NHS stops these legal battles, hence preventing future public drama & donations

The NHS policy of fighting prolonged legal battles makes those parents regard them as the enemy, poisons the relationship between hospital & parents

Alfie's and Charlie's parents will probably forever feel - wrongly, of course - that the NHS blocked their child's only chance of life.
If their child died even during transfer, at least they would feel they had done all they could, instead of feeling lasting bitterness towards the NHS and the UK legal system.

Where the state must step in, of course, is where parents are blocking possible treatment that could save life or prevent future disability.

Once all hope of recovery has gone, however, the state and the NHS should step back

But my point is that, under UK ethical guidelines, keeping brain-dead, responseless bodies alive artificially isn’t humane.

Alfie was a person in his own right and his right not to have oxygen rhymically pumped into his lifeless, unresponsive body just to ensure that his heart kept beating is also important.

Would anyone want that for themselves?

I wonder if part of the issue was, it's ok going off to a different country, but ultimately wouldn't the NHS/Government have to pay for his care?

As someone who respects the Pope a lot, it is really difficult. I don't believe turning off life support is euthanasia, as if the person has the ability to exist without it, similarly to how Alfie did they will. That being said, by Wednesday I think, they had resuscitated him themselves 3 times.

I believe they said due to brain & nerve damage he'd feel no pain. But on the other hand wouldn't struggling to breathe be classed as discomfort? As you'd be pretty much choking for air.

It'd be interesting to know what measures Germany & the Vatican could hypothetically take, that Alderney couldn't. They said once the brain is damaged that's it. Unlike the liver that can regenerate.

To think if they hadn't got the mob outside, if staff weren't so scared of the family & new found friends, Alfie could have spent his last days at home.

I also think if you look to the longterm, caring for a baby that's vegetative is different from a young adult / adult.

The nature of the parents relationship wasn't known. Who wasn't to say all the care would fall to one person. I also saw that by lunchtime they'd raised over £140k for his funeral, what will they do with excess monies. I doubt very much that donating it to Alderhey is something they'd consider.

Another thing that has just popped into my head, the Dad is now known multinationally, the petitions stated things like Dear Queen, if you don't act we'll take it you don't care about your people. So many petitions, that didn't get them anywhere. Especially with the use of emotional blackmail.

The next we'll here is comparisons between Louis / Charlotte / George to Alfie. Would the Queen or Prince William or Prince Charles let one of them suffer the same fate?

Realistically you only have to look at Queen Victoria and her children, who had access to the latest healthcare, which caused issues, as advisors tried their best to cover up any issues, such as syphillitic madness.

Or more recently you have Countess Sophie who suffered during her last childbirth, although not really the same.

I do think after Charlie & Alfie, the legal system will perhaps look to tighten up its framework. So parents don't get given false hope. Although if it wasn't for the legal issues it wouldn't have been in the news really.

On one hand it's weird the Christian agencies saying its an injustice, when they are taught it's God who gives and takes life.

Another thing Alfie's Army was made up of some of the same people who would protest outside of abortion centres. I know my view, but has it changed anyone else's view on aborting after being told at a scan there's a chance of x/y/z?

BigChoc, shouldn't the NHS or courts intervene when the parents' wish to take their children abroad is harmful to their child? Does the parents' wish to feel they have done everything carry more weight than the child's right not to suffer? Where do you draw the line - is it OK for parents to take their children abroad when, for instance, the treatment they want is total woo?

Thank you for this thread. I've read it all with so many thoughts running through my head that I could produce an epically long and unreadable post. I shall try not to.

On Spero's blog and the surrounding arguments on rights, thank you for that excellent piece. We have had experience of family courts, private law side, and the difficulties of evidence, of proving a case on limited resources in a highly emotionally charged environment, were enormous. CAFCASS in this case were inept (remarked on by the judge) which leaves everyone very vulnerable, and the best interests of the children get lost. We viewed this from the life-privileged position of articulate educated people with good legal support. How easy to imagine it from the view of someone without those advantages who ends up losing through what would feel like no fault of their own.

We have also had extensive experience of the NHS treating a rare and complex illness and end of life care. Mucky has written elsewhere of her NHS experiences and I can see why she posts as she does. I would say we had superb clinicians, excellent in-patient care, and high quality end of life support. It all sits within a system strangled by resources so the good elements end up fighting to be heard over the bad. Lack of appointments, lack of posts, lack of community support. The occasional bad member of staff who could have caused serious ill feeling at difficult times with people less hard to offend than us. We didn't have the money to go private, the treatment would have been no different, but if it had meant less stress in accessing services, that would have been the advantage.

We also have experience of navigating our way through the social care and SEN scenes, as many of AA probably do. In common with some of our NHS dealings, it was constantly obvious to us that those who shout in the most articulate and reasoned way, preferably in a solidly middle class context, get heard loudest. I remain, years down the track, furious at the mincemeat that the current system leaves of families who can't do this. Who can't write well; can't cite legislation; can't fund legal letters; can't explain confidently in a meeting of 12 professionals; can't research options. No wonder people think the authorities are out to get th and don't care about them.

On critical thinking, I completely agree. Our teenager is bright but lazy and spends as much time as possible on social media. They are not alone. I find it depressing that a single post on Reddit by someone claiming to be qualified is taken as gospel to change established scientific view; that 'research' involves googling and taking the first result (especially if it's Wikipedia) to use in homework. That the only critical evaluation is whether or not a source is getting laughed at online. This child will almost certainly end up with a good degree from a good university and is studying subjects that should have analysis built into them.

And finally (!) on jobs. This week I saw an AI consultant (paid 3.5k per day) talking about a future where many of the remaining manual jobs are lost to automation. Nowhere in his list of pros and cons was job losses. Clearly not a con to an individual employer but to society? When asked about new jobs created by our bright new future he offered up Uber driving. I really, really fear for our country's socioeconomic future if we do not try to rebuild all of this from the ground up. Whether it's looking at a universal income and a society built on volunteering, or massive investment in proper support for jobless communities, we can't continue to sail blindly into a future which leaves so many of us disenfranchised from society, whatever society will mean.

Frombothsides, I agree. As an adopter navigating the "system" it can be infuriating and I'm always mindful of how families on the other side of the adoption triangle must experience the power of authorities when hugely vulnerable, terrified and generally less able to fight their corner fir a myriad of reasons.

The other thing about the alder hey issue is the location. The city of Liverpool has been maligned many times by those in authority, most notably with Hillsborough when the establishment actively lied, deceived and blamed vulnerable working class families. Culturally, I think the lessons that authority can and does lie and abuse it's position and isn't to be trusted has been absorbed for 29 years - I'm not surprised that many in the city who are experiencing austerity on levels not seen for generations here with Hillsborough as a cultural foundation are angry and scared.

comehome your post is spot on

Gnu Once NHS doctors / the Uk state have agreed they can do nothing, then yes I think they should step back and let the parents feel they have done all they could
BUT

• only at another hospital and only without any further NHS funding

It doesn't make any difference to a terminally ill person with a dissolved brain

but it makes a great deal of difference whether the parents can come feel they have done all they can,
or whether they feel a lifetime of rage against the system for denying them what they consider - wrongly - to be a chance for their child

UK law differs to that of some other countries in such cases wrt balancing parents rights vs doctors opinions, when it comes to terminally ill children,
so we should at least consider whether it is the UK that has the balance wrong

rather than arrogantly insist the Uk state is correct and can over-ride the parents‘ wishes even when the child is beyond help.

I live in Germany, work in a high-tech STEM environment and at least among my social circle people think that the UK state abuses its power over people in such cases.

In the UK, there remains the attitude that people are "subjects" not "citizens" and hence should be deferential to the state

Flying - if the test was risk of significant harm and I was the Judge I would have decided that long term ventilation with no hope of recovery was significant harm; to his human dignity and probably to his physical self as well - i assume long term ventilation leaves the body prey to all sorts of risks of infections, sores, etc, etc.

So i think the same outcome would be reached; i just feel more comfortable with shifting the test to significant harm as it permits more of a perception that the parents aren't demonised for wanting to make choices for their child. lawyers are talking about 'autonomy' and 'dignity' for a baby which I think most non lawyers can't get their head around; the baby is so utterly dependent on adults and cannot exercise any autonomy. This is I accept, a more dangerous argument when applied to adults - BUT adults and children are different, that's why we are in this mess, because the parents are driven by their emotions for their child.

Frombothsidesnow - your post really resonates. I think you have hit the nail on the head. Its not just about a lack of willingness to engage with reality of death. Its the whole imbalance of power between those who apply the law and those who are subject to it, which I agree is getting more and more out of whack with very serious consequences. You say
"we can't continue to sail blindly into a future which leaves so many of us disenfranchised from society, whatever society will mean" - I agree entirely.

Totally agree with both your points, ComeHome.

There was a thread on here recently about the T shirts that had been pulled from sale because they featured a red 96 and several other offensive images. I was astonished, as many others were, how many posters weren't aware of the significance of that or of the wider story of Hillsborough other than a 'football disaster'.

Thank you, Spero. I am so concerned that not enough people are recognising that the social models of the post war era are just not sustainable.

We were told by the way that death in long term ventilation often occurs through infection.

it doesn’t make any difference to a terminally ill person with a dissolved brain

Would you be ok then if this was done to you or to a friend/relative of yours after a severe brain injury and brain death? To essentially have your corpse ventilated, suctioned, fed, cleaned, pressure sores dressed, chest infections treated over and over again, potentially for years?

I don’t think his parents wanting this for Alfie should mean that it’s the right thing to do for the separate, individual person that was Alfie. Imagine years more of it - even if he went from hospital to a house in Italy or wherever he’d need continuous, 24 hour, hospital level care. He would grow bigger and his heart would beat but would remain as unresponsive as a dead person.

Significant harm is safeguarding and best interests in capacity - any change in the tests would require a lot of legislative upheaval surely. And some unintended consistencies. Best interests is fine.

It doesn't make any difference to a terminally ill person with a dissolved brain

The problem is that we don't necessarily know that when the brain stem is present. As I've said elsewhere, I've dealt with a child with hydranencephaly which has a similar effect, and everyone who dealt with her reckoned that it was clear that she could feel pain and discomfort.

And then, are we saying this doctrine only applies to the child without a brain? Why are their parents different from other parents?

surprised In such circumstances, I would wish for my family (if I still had any) to do with my carcass whatever made it easier for them.